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Hide and Seek at 23andMe, DNA Relatives Consent, Opt-In, Opt-Out and Close Relatives

To say that the matching policies at 23andMe are confusing is an understatement. Of course, that would imply that we could figure out what those policies are, this week, exactly. What I have been able to discern is that there is widespread confusion about the entire topic. This is my attempt to figure out which end is up, and who can see whom, under what circumstances. I feel like this is a high-tech game of Hide and Seek, a game customers should not have to be playing.

On October 17, 2014, I received this e-mail for one of the 23andMe accounts that I manage. I did not receive it for any of the other accounts that I manage at 23andMe.

When I clicked on the “can’t miss it” red block in the e-mail, it did absolutely nothing. However, by clicking on the “view as a web page” link, clicking on the “Confirm your DNA Relatives participation” took me to the 23andMe signon screen.

I signed in, but was not taken to the account in question. When I switched to that account, this is what I saw – in essence, a second warning.

I was not allowed to proceed further until I clicked on yes or no.

Of course, this begs the question of why my other accounts weren’t asked the same question. With the exception of one, they are sharing in DNA Relatives too.

It also made me wonder about the sharing with Close Relatives option.

I decided to check the DNA Relatives Option information in the Privacy/Consent settings, but there was nothing further. You can visit your consent options by clicking on the down arrow by your name, shown on the upper right hand corner of the screen shot below, and selecting “account settings.”

So, what the heck happened to the close relatives option?

It seems that 23andMe discontinued the “close relatives” opt-in or opt-out, according to their June blog article, below.

At this point, if you had not ‘opted out’ then it was assumed that you had in effect ‘opted in’ and all of your matches including your close relatives would be shown.

The day of the expected default opt-in change, based on the June announcement (above), 23and Me posted a retraction of the June article, on their community forum, below.

Dear Community,

We made a change from what we promised and I want to apologize. We promised that the roughly 350,000 customers that had not consented to see Close Relatives in our DNA Relatives feature would be automatically opted in at the end of a 30 day notification period. I understand that that was extremely exciting for many of you to have so much data potentially come your way. It was unfortunately a mistake that we promised that.

I do not think it was ever the right call to promise that we would automatically opt-in those customers. Core to our philosophy is customer choice and empowerment through data. The Close Relatives features can potentially give a customer life changing information, like the existence of an unknown sibling or the knowledge that a relative is not biologically related to them. Customers need to make their own deliberate and informed decision if they want this information. It is 23andMe’s responsibility to make sure our customers have a choice and that they understand the potential implications.

The timing of the change is unfortunate and I apologize the announcement came late on a Friday night at the end of the 30 day period. The article in Vox made me and others look into the language in the consent form and that is when I learned about the proposed changes coming to the DNA Relatives community. As 23andMe has moved from being a start up to a bigger and more mature company, I am not involved in every decision. This is a decision that should have come to my attention but it did not. We will learn from that. 23andMe is hiring a Chief Privacy Officer and that too will help us avoid these types of mistakes in the future. We are also already planning to evolve the consent process to make it simpler and more clear for customers.

Going forward, we will continue to prompt the customers that have not made a choice about Close Relatives to make a choice. We understand how important that is to you. We will do a mix of emails to these customers and pop-up prompts at login to get customers to make a choice.

I apologize again for the disappointment and for not having clearly communicated the reason for reversing course. 23andMe continues to grow and pioneer the way we think about consumers exploring their DNA. While we continue to innovate we may also err along the way. We can only promise that we will always listen to and do right by you, our customer, and will never fear having to redirect our course when it is the right thing to do.

Sincerely, Anne Wojcicki

So, now it appears that unless someone has specifically ‘opted in’ to DNA Relatives as a whole, they are automatically ‘opted out,’ a 180 degree reversal. Of course, if you were one of those 350,000 customers who received a notification about opting out, and did nothing, so that you could be opted in at the end of the 30 days referenced above, you would be thoroughly confused because you THINK you’re now opted in.

23andMe has a habit of posting information on their Forum which members must actively check, instead of sending e-mails to their customers or posting this kind of information on their blog that is sent by subscription. One of the forum followers was kind enough to point out this recent posting detailing changes that have occurred in October and the 23andMe policy moving forward.

It’s signed, Chistine on behalf of the 23andMe Product Team

I can find nothing on the current customer pages providing any information about these decisions or the match status of DNA Relatives/Close Relatives.

Furthermore, 23andMe is now asking some, but not everyone, who are opted in for DNA Relatives if they are sure. My account that was asked tested in 2010, so was not caught in the 2014 selection option confusion.

I feel that this methodology discourages many people from participation. It infers that there is something frightening that you ‘ought to be’ concerned about – especially if you are asked about the same topic several times.

In summary, here is, I think, what we know, as of October 16, 2014.

Everyone will have to make a specific choice to opt-in to DNA Relatives, one way or another, after testing. If you don’t specifically opt-in, you are opted out. Consent to test apparently doesn’t count as consent for DNA Relatives.

Clients prior to June 5, 2014 who were opted in to DNA Relatives but out of Close Relatives will be prompted to select an opt-in with close relatives included, or an opt-out entirely.

Clients prior to June 5, 2014, who did opt-in to participate in DNA Relatives, but did not have any selection to make about “Close Relatives” will be required to confirm that they want to continue in DNA Relatives before they can proceed to see their matches. This is apparently the e-mail that I received for one of my kits. It’s still a mystery why I never received it for the others who tested even earlier and clearly before the “Close Relatives” option existed.

Clients between June 5, 2014 and October 16, 2014 who were automatically opted in to DNA Relatives with close relatives included will also be prompted to confirm their participation in DNA Relatives and until they do confirm that option, they will not be visible nor able to view close relatives.

New customers will be prompted to opt-in or opt-out of DNA Relatives and opt-in will no longer be the default.

Participation in DNA Relatives will now include close relatives and that will not be a separate option.

I’m very glad to see that everyone who opts in to DNA Relatives includes close relatives. To do it any other way is not only confusing, it’s more than a little disingenuous, especially given that someone may not realize why their close matches aren’t showing. I had more than one client have a panic attack when their family member wasn’t showing as a match, especially when they were expecting to see a parent or sibling. In my opinion, having to enable the “close relatives” option caused huge problems and wholly unwarranted stress. If it’s truly gone, never to return, I’m very glad and applaud 23andMe for that decision.

The bad news is that many of the 350,000 people referred to in the September community forum posting are still anonymous, and they many not even realize it. Many probably presumed, quite logically, that because they were taking a DNA test that included matches, that they would receive matches without having to do anything further. Furthermore, they received the 30 day notification that they would be opted in if they did nothing, so they expected to be opted in. But they aren’t.

Currently, at 23andMe, you have to jump through more hoops to obtain your genealogy results than you did (when they were providing health information) to obtain your health results. I hope that the message provided to people who are making the “Opt In – Opt Out” decision can be worded a little more encouragingly and present both sides of the risk/reward coin. I would hate for their entire response to be fear based due to the tone of the selection message and the fact that they have to answer this question repeatedly – like the dreaded Alzheimer’s health question – back when 23andMe was providing health results.

Here, let me give you an example vignette:

Hi, 23andMe, I’d like to test for genealogy matches.

Great, send me $99 and you’re on the way.

Spit…mail….waiting…waiting…

Good news, your results are back. Do you want to opt into DNA Relatives? You know you could find out information about your family that is upsetting to you? It could change your family relations?

Really? Hmmm…I think I want to see. That’s why I tested.

Another e-mail: Are you sure, really positive that you want to remain in DNA Relatives? You know, you could find out really upsetting information. You can see other close relatives and they can see you.

Geeze, I don’t know….maybe not…I’ll wait till I sign on next time to deal with this.

Signing on next time….

Do you want to opt-in to DNA Relatives? You know, you could find out some really disturbing and upsetting things about your family? It could change your relationship with your family members.

After repeating this warning several times, it begins to appear like 23andMe is discouraging your participation, not informing you of risks and rewards. There is no upside mentioned, only repeated negatively framed warnings. Given that genealogy/ancestry is the only reason for the consumer to purchase this product right now, this approach seems a bit counter-intuitive and overkill. In the least, the warning should be given up front, during the purchase process, and then not constantly repeated.

However, given that 23andMe is still gathering your health information and utilizing it in their medical research, even if you opt-out or don’t opt-in to DNA Relatives, assuming you haven’t opted out of medical research as well, warning you up front would discourage a sale and would prevent them from collecting your genetic data. In essence, 23andMe doesn’t care one bit whether you opt-in or opt-out of DNA Relatives, but they care a whole lot about your money and your participation in medical research.

The constant changes and hoopla are confusing people and frightening some. Others are becoming too discouraged by a lack of positive genealogical results to continue.

23andMe was first in the game with consumer autosomal testing, but their ever-changing policies have become and remain confusing. They have done nothing to clarify publicly, leaving everyone uncertain and a little reluctant.

23andMe entered the genealogy marketspace, but they seem to be focused on protecting people from genealogy matches. This seems almost like a conflict of interest, or may be better stated, a Kobayashi Maru, or no-win situation. It seems that the health testing aspect is causing 23andMe to adopt such restrictive procedures that it’s making the genealogy aspect of their product increasingly restrictive and difficult. I’m sure this is reflective of their primary goal, which is medicine, and the fact that genealogists just happened to be interested in genetics as a tool was, for them, a happy accident that provided a source for test subjects. Genealogy is not something 23andMe is primarily interested in. I’m sure they aren’t making things difficult intentionally, but the net effect is far from encouraging.

I’m finding that their protections are barriers and the required steps are confusing for customers and self-defeating for genealogy, and they are, unfortunately, cumulative hurdles:

Having to specifically opt-in to DNA Relatives, even after consenting to test when purchasing the product which includes matching

Having to request to communicate with other participants

Having to request to “share DNA”

Having to confirm that yes, you really did want to ‘opt in’ to DNA Relatives

About a 10% communication request response rate

Most of the 10% of the people who do respond know little, if anything, about their genealogy, nor are they terribly interested

Having to utilize the 23andMe corporate message system instead of communicate with your matches via e-mail

Match limit at 1000 people unless you are communicating with more than that number. After 1000, matches fall off your list.

The misleading (health and ancestry) notation in a sharing request which frightens people as to why you want their health information, causing people to decline to share

Constant change about who you are/aren’t seeing as matches and why

Confusing and conflicting opt-in, opt-out information delivered on four different platforms; e-mail, on your personal page, their blog and their community forum. In essence, this means that almost everyone except the most dedicated 23andMe follower misses at least part of the information.

23andMe is approaching the point where the pain level of participation is at the threshold of no longer being worthwhile except for extraordinary cases like adoptions where the participant is desperate for any possible crumb.

I thought more about this situation, and I believe that the underlying problem is a fundamental disconnect in the focus of the two groups. 23andMe’s corporate focus is and always has been health related research, compilation and manipulation of genomic “big data.” Taking a look at their recent American Association of Human Genetics papers is a good yardstick of their corporate focus. Not one paper mentions the genealogical aspect of their business, and even the paper that does indirectly help genealogists by reducing false positive identical-by-descent segments is presented from a medical perspective. In essence, the genealogy community is a source for DNA for 23andMe. They aren’t focused on genealogy or interested in serving this community. That’s neither good nor bad…it’s just the way it is.

The genealogy community, on the other hand, is frustrated by the increasingly long list of confusing hurdles at 23andMe that people who test for genealogy must navigate before they can reap any of the potential benefits of matching for genealogical purposes. Each successive hurdle reduces the number of people who complete the course and those who make it to the end are either the died in the wool genealogists who have tested elsewhere anyway or people with little or no knowledge of their genealogy. Worst case, people who test at 23andMe for genealogy will leave with a bad taste in their mouth and never test again because, frankly, it’s neither easy nor fun.

We don’t know exactly how many people haven’t opted-in for DNA Relatives, but we can surmise some based on their publicly released information. In the September retraction, 23andMe said that there were 350,000 who had not opted in, or out. We don’t know how many have actively opted out. In their ASHG abstract, they mention that 550,000 have consented for research. That tells us that less than half of their clients are opted in for DNA Relatives, or about 200,000 (assuming no one opted out), or perhaps less now with the recent “are you sure” messages like I received. Given that only 10% of the people who DO actively opt-in for DNA Relatives respond to inquiries, that’s a whole lot of people not clearing the hurdles for one reason or another. Of their entire data base of 550,000, only about 20,000 people clear the hurdles and engage, or about 3.5%. That means that there are 530,000, or more if you include the unknown number of opt-outs, who don’t clear the hurdles.

I hope 23andMe gets their cumulative act together relative to genealogy customers. You’d think with genealogy customers being their only source of corporate revenue right now (except for government grants and venture capital), that they would be bending over backwards to make the genealogy related products and processes straightforward, accessible and easy to use. Now would be a great time for some positive changes!

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From Anne’s “Dear Customer” letter:
“The article in Vox made me and others look into the language in the consent form and that is when I learned about the proposed changes coming to the DNA Relatives community.”

Really?
To me that says “I don’t care about my Genealogy department to know what is going on there.”

Near the end of the same letter:
“We can only promise that we will always listen to and do right by you, our customer, and will never fear having to redirect our course when it is the right thing to do.”

Really?
I can not believe the garbage that comes out of her mouth. How is she doing that?

I have been with 23andMe for several years, because back then they were the only game in town. The treatment of the Genealogy community has never be great, but has continually gone down hill from the get-go. I’m not desperate to find close relatives (like adoptees, or an unknown father). Unless there is a compelling reason, I will not test with 23andMe again. Hopefully, the merger with MyHeritage will give MyHeritage autonomy over Genetic Genealogy. But I am very skeptical.

There is also the issue of your name and match info becoming public via the Countries of Ancestries tool once you fill out the Ancestry survey. AND the fact that if you select “public profile” your name is public but you are still hassled to share genomes. I am pretty sure most people who have a public profile would want that info public too. It makes no sense at all.

There are two other very confusing issues with 23 and Me privacy. 1) If you take the Countries of Ancestry survey, your name becomes available for download via the Countries of Ancestry tool, but you do not become public on the general relatives list. 2) If you choose to make your account “Public” it means your name is public but you are still hassled with having to accept all genome sharing requests. Is there no way to just select that your genomes sharing should be open to all your matches? It is beyond clunky and stupidly designed. Clearly, no one at 23 and Me is trying to use their own system for genealogy.

I am kind of leery of them now with the merger with Pfiser. Big Pharm is now going to use our DNA to exploit it to create new diseases to manufacture prescription drugs for.

The tree is atrocious! You say they have partnered with MyHeritage, is that geni.com? So, now I will have 2 geni.com pages to deal with, as I already set up a free account there and put in my direct line tree.

I have not found any cousins that aren’t related through my 2 Mayflower ancestors. ALL of my matches at 23&me, FTDNA, and the old Sorenson/AncestryDNA are all surname matches, I have found some people who match in the DNA, but it is hard to find where we match, as most of them have no info to share, as they are all just starting out. I have been doing trees for some of them, and it takes me away from my research and I have not been able to hurdle any brick walls yet.

I sent messages to all of my matches at Ancestry and all the the responses are, “What do you have”. “What do you want to know”. I finally found 2 that I went through their online trees and found a connection.

I got the above message with the name I put on a 2nd kit I bought that no-one in my family has used yet. 23&me has been very disappointing in results. most of my seemingly close matches did the test for medical reasons and are not doing the family search. The only 2 cousins left on my father’s mother’s side, his sisters sons, have now refused to test because of the bs & confusion. So, I will forever have that blank on her side.

I got so confused because, even though it looked like I was opted in for close relatives (because I am opted in for DNA relatives) it just wasn’t clear because of all the confusing messages. So, I emailed them told them I was confused by their messages, made it very clear that I wanted to be opted in for all DNA relatives, including close ones, and asked them to confirm that I am (which they did).

I’ve gone in and opted out of their “scientific research” as well:
“You have NOT given consent to participate in 23andMe scientific research. This means that any survey answers you provide cannot be included in peer-reviewed published research articles. Note that 23andMe may still use the information for internal purposes”
But I wonder what they mean by “internal purposes”. I do regret answering all those surveys.

Family Tree is not that much better. Most of the time the website doesn’t work for newer computers but does for the older ones likes XP which is so slooow. I had matches of Jewish and Iranian with Family Finder, but with their new test of My Origins, it was not so. Genetics don’t change and I was assured it was a more up to date test. I still don’t believe that.

Is there any really good dna tests out there? I am opting to consider National Geographic as my full sequence dna test. They are professionals and I feel I will get the best results and correct answers.

P.S. anyone can use Go Daddy website, which is which Family Finder uses. It’s free from what I remember when I wanted to use it.

Fortunately, GEDmatch is picking up a lot of slack for 23andme, FTDNA and Ancestry. If everyone who is serious about genetic genealogy would transfer their results to GEDmatch using real email addresses, these companies’ shortcomings would be of less concern.

Nancy, the Genographic Project is not a full sequence test. They test a selection of mtDNA and Y chromosome SNPs, which are useful for assigning haplogroups (but not as detailed as full sequence tests). Their autosomal test for biogeographic origins is also more generic than many people expected. It is not designed for locating cousins.

GoDaddy.com is a company for registering domain names. Is there another company with a similar name for DNA testing?

IIRC, wasn’t this brought up when 23andme lost the health part of their product?.

The query was that some only wanted to participate with 23andme for the health part and did not want anything to do with the ancestry part.
Question was raised as to allow people pre November 2013 kit have a choice.

Clearly since they lost the health product in November 2013, then the default should be only for ancestry and hence no choice for people allowed.

Thank you for explaining the recent brouhaha so clearly. I followed some of the heated debate on a Facebook blog and because it seemed to me that a number of people were getting the argument back to front I didn’t get involved. It just went round and round in circles for days on end.

My own preference is for complete transparency, and I’m concerned that the many adoptees here are getting a raw deal. I believe that the right of the adoptees to know who they are outweighs any embarrassment their biological parents might feel at discovering a child wanting to make contact.

But the topic I wondered if you might take up for me concerns the total lack of any help from 23andme in processing the genomes of people who accept sharing invitations. I joined 23andme in July last year and stumbled around like a lost sheep for months wondering what I was supposed to do with this heap of information we were given. Little bit by little bit I managed to piece together some kind of system for processing people, and I’m now trying to pass on what I’ve learnt to others who are also stumbling. I consciously court adoptees and others who don’t know their ancestry because I know that if they share closely with someone who does know their ancestry, those common ancestors will be theirs too, and although they may not know how to join the dots, they may at some stage be able to piece together a line back to the ancestors.

The invitation I send on my brother’s account says this:

I am Michael’s sister and am managing his account as he doesn’t “do” computers. I see we share DNA, and now that I’m getting the hang of working out how to find relationships I hope you will share with me so I can try to find our common ancestor. I also have a huge family tree on Ancestry.com.au with many lines of ancestors going back to Saxon times and beyond, so our common ancestor has a good chance of being in my tree. Even if your ancestry is unknown, if you share closely on the same chromosome with someone whose ancestry is known, then it’s likely that it’s the same ancestor as yours. Best wishes Merilyn Pedrick Aldgate, South Australia

And after I’ve processed their genome I send this:

Hi (name)

Thanks so much for sharing with me on chromosome (number). I’m beginning to realise that this DNA stuff is not so much an exact science as an aid to genealogy. The DNA tells us we’re definitely related to each other and now it’s up to us to find out how. If you go into my profile you will see that I’ve listed our ancestors seven generations back from us (my brother and me). This is at least as far back as we will need to go in order to find a common ancestor. I would love to see your family tree if you have one. If you’re an American then our relationship may well be in my paternal great grandfather’s ancestors. He was Rev. William Gilbert Marsh and he was born in Hingham, Massachusetts in 1841 and came to Australia in 1868 where he stayed and left many descendants. All his immediate ancestors were American, so I imagine that our many American DNA relatives are the descendants of those Massachusetts ancestors. I’ve already found seven DNA relatives with whom I know we share a common ancestor. It’s very exciting when you find one! Here is the link to my tree: http://trees.ancestrycom.au/tree/35303155/family [1] You may need a user name and password to get in, so if you’re a member of Ancestry.com you can use your own log in names, but if you can’t access my tree just send me your e-mail and I’ll invite you as a guest. My Gedmatch kit # is M150603, my brother Michael Marsh’s kit # is M155290 and my son Simon Arkell’s is M410335. I struggled with all this huge amount of information we were given when I first started back in July 2013. Then one of my clever DNA relatives started giving me a few tips and bit by bit I’ve learned more every day. It will happen with you too if you are keen to make it work. Start by going into RESULTS/ANCESTRY TOOLS/FAMILY INHERITANCE:ADVANCED, and if you’ve invited anyone to share with you who has accepted you’ll be able to find them on the left. Then click on “Compare” and that will bring up all the 23 chromosomes and you’ll see a little coloured bar on one or more of the chromosomes where you share DNA with that person. Then click on “View as a table” and the information that comes up is what you would save to a spread sheet (or a Word document as I’ve done). Save them in chromosome order and then sort on the start numbers. When you get a few people sharing that chromosome, and sharing those numbers, i.e. overlapping, you know that you and those people may share the same common ancestor. But there’s a caveat – don’t forget that you have two sides to every chromosome, so just because two peoples’ start-finish numbers overlap, it does NOT mean that they definitely share a common ancestor with each other. If they overlap, you need to compare them to each other, to see if they match each other on the segment they both match you. If they match each other on that segment, THAT indicates a common ancestor. If they do NOT match each other, it means that one came from your father’s side, and one came from your mother’s side. This will be easier if one of your parents has tested and you know which side you share on. There’s a very good book that I downloaded on to my Kindle recently which gives you a good account of how to manage all this new stuff. It’s called “Genetic Genealogy: The Basics and Beyond” by Emily D. Aulicino, and it’s very easy to read and understand and will give you more confidence to get stuck into this new obsession (that’s what it’s become for me!) I’ve also just seen a very good guide to making sense of this by an adoptee, Richard Hill, who has given his permission to share this: http://www.dna-testing-adviser.com/support-files/guide-to-dna-testing.pdf [2]

If they have people who share with them I add this:

I’ve pasted below part of my spread sheet where you share a segment of DNA on the same chromosome as several others apart from Michael (my brother). See how the big numbers in the middle overlap? This indicates a possible common ancestor give or take a generation or two, so long as you all match each other, which you do.

Looking forward to filling in the gaps.

Merilyn

Below is an example of what I past from my spread sheet

1 Lucille JXXX 3000000-11000000 15.1 cM 1763

1 Cathy KXXX 3000000-11000000 170 cM 1934

1 Roberto JXXX 3000000-14000000 22.0 cM 2400

———————————————————————-

On my spread sheet which is a Word document I colour the surnames of people who have matches in different colours so that I can see at a glance who can be clumped together after I’ve compared them to one another.

I’m not saying that what I’m doing is wonderful! But at least the people I’m writing to can use it to work out a system of their own for processing the ones they match. I also recommend that they invite all their DNA relatives and keep inviting new ones as they join. I also recommend that they look at their matches’ Countries of Origin to give them a clue about where their matches grandparents have come from.

This is the type of thing I think 23andme should be providing, but with their expertise I’m sure they’d do a better job of it.

I also agree with you about their family tree, which as far as I’m concerned is only good for linking parents to children for the purpose of having the little blue Ps and pink Ms next to their DNA relatives’ names.

Dear Roberta, we’d like to hear a sound opinion on their current hideous technology. e.g. the current chip which sprouts a raw file incompatible with web tools and incompatible with ftdna. while older v2 v3 chip were. is it just me or are they advertising as a genealogy product which, in fact, doesn’t compare with ftdna one and/or their past one?

23andMe implemented the solution they felt was best for their company and their corporate goals. It doesn’t happen to be a compatible solution for what we, as consumers, want to do with the results outside of their company. While I wish they had made a different choice, they didn’t, and it’s their prerogative based on their corporate goals. It’s our prerogative to test there or elsewhere, or both.